It’s official. My stem cell journey has begun, and I am allowed to tell all and let you follow along my journey. I am also wanting to chronicle this for myself so I can look back and see how it all unfolds over time.
I am part of an amazing stem cell study being done by Cleveland Clinic, Case Western Reserve University and University Hospitals here in Cleveland, Ohio. There are to be 24 patients enrolled, of which I am officially patient number 17 (which has incredibly been my lucky number all of my life). This is a phase 1 study which is trying to assess the safety of autologous mesenchymal stem cell transplantation in people with Multiple Sclerosis. There are also some secondary measures that they are trying assess, one important one being vision. You have to have had optic neuritis at least once and I believe some thinning of the retina.
One week ago, June 12th, was my “screening” visit, where I went through a whole battery of tests and signed every piece of paperwork needed for the study to officially begin. I met the clinical team, including the lead investigator of the study, Dr. Cohen. Super great group of people and very thorough. I had blood taken, neurological testing, peg tests, memory tests, vision tests, an MRI, a visual evoked potential test, and a chest x-ray. For the most part, I will not be finding out the results of these tests to keep me blinded to my scores on some of these tests.
Basically, no news is good news.
I did get a phone call the next day telling me that everything was a go and that my EDSS score was a 4.0. This threw me a little bit because I was expecting my score to be a bit lower. For those of you who don’t know, EDSS score is a rating of disability for people with Multiple Sclerosis. For this particular study, you need to have a score between 3.0 and 6.5 to be eligible to be in the study. Anyway, after the phone call I knew that I was to be at University Hospitals on June 19th for my bone marrow aspiration. And that happens to be today.
Currently, I am sitting on my couch nervously waiting for the lidocaine and morphine to wear off. My aspiration was at 7am this morning, and I was done by 8. I did get an IV with a nice amount of morphine and lidocaine local anesthetic. But I will be honest with you… It still hurt… A lot. Because I am so little they had to do both hips. The doctor and nurses were amazing and so good, but there is no easy way to get through it without pain. You just breathe and bear it. They did get a lot of bone marrow and now we wait 5-6 weeks and pray that the stem cells grow and multiply beautifully. After they grow, they are cryogenically frozen and a small sample is sent for testing for viability and sterility which takes about another 5 weeks to come back.
Currently, I have two more appointments scheduled starting in August for more of the same testing, just to see how and if my MS and symptoms are changing prior to getting the treatment. Then I have a date of October 1st for my stem cell infusion! Although per the doctor, it might be sooner depending on the growth of my cells and other factors.
So, there it is.
Welcome to my journey. I hope this is an amazing leap for the treatment of MS and gives us some much needed answers and hope for the future. I will do my best to be candid and keep everyone informed as to my progress through the study.